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Childhood obesity: Mississauga couple fights leading genetic cause

Keegan and Tanya Johnson&rsquo;s efforts toward research on Prader-Willi Syndrome have grabbed the attention of even Michelle Obama.

Keegan and Tanya Johnson goof around with sons Denzel, 6, and Dante,7, who was born with Prader-Willi Syndrome. (VINCE TALOTTA / TORONTO STAR) | Order this photo

By Peter SmallStaff Reporter

Thu., Aug. 23, 2012

When Keegan and Tanya Johnson’s first child, Dante, was born with a genetic disorder that condemned him to a life of insatiable hunger, they decided to take up the battle not just for him, but for all such children.

Their tireless efforts over seven years have brightened their lives, helped raise $2 million for research and earned the Mississauga couple an upcoming invitation to the White House.

But the future looked dark in 2004 when doctors told them Dante, who was floppy and didn’t cry, had Prader-Willi Syndrome. The disease, which affects one child in 15,000, has no cure. It is a leading genetic cause of childhood obesity.

Sufferers can’t control their hunger and if left alone may eat themselves to death. They are usually developmentally delayed, learning disabled, and require constant monitoring. Their endless food cravings can trigger angry meltdowns.

Some families have to lock up their fridges, though it hasn’t come to that for the Johnsons.

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As Keegan put it to his wife, while they were absorbing the news at McMaster Hospital seven years ago, they could choose to either wallow in gloom or take a more positive path.

“We made a conscious choice to make a difference,” says Keegan, 37, president of Ethoca, a company that works against online fraud.

With Dante still an infant in 2005, they launched their One Small Step walkathon in Etobicoke’s Centennial Park — drawing on their wedding list of family and friends — with a goal of raising $15,000.

They drew up to 300 participants and raised $50,000.

Today, One Small Step walkathons are held in 65 towns in Canada, the U.S., France and Belgium, and have raised $2 million for Prader-Willi research.

Along with two other couples, the Johnsons founded the Foundation for Prader-Willi Research Canada, of which Keegan is president. Keegan is also executive director of the older U.S. sister group, the Foundation for Prader-Willi Research, based in Los Angeles.

One of the U.S. foundation’s videos was a winning entry in a contest held by Michelle Obama’s Let’s Move initiative to fight childhood obesity — earning the couple an invitation to the White House.

The Canadian foundation relies on volunteers and has only one paid employee, one one-quarter time. All money raised, after 10 per cent is deducted for expenses, goes directly to research, Tanya says.

“It’s like therapy for me,” says Tanya, 38, a special education teacher at Bishop Paul Francis Reding Secondary School in Milton.

“I feel like I’ve taken back control in my life, instead of letting the syndrome control me. We pour our hearts and energy into this because we believe it’s possible … that through research we can eliminate some of these challenges.”

Research over the years has already eased some symptoms. Dante looks quite normal, instead of shorter and fatter than other kids his age, as a result of daily growth hormone injections. He is in Grade 3 at Mississauga’s St. Francis of Assisi Separate School, helped by an educational assistant and a counsellor.

Although seemingly shy, he acknowledges that he wants to be a teacher when he grows up. He’s pals with his younger brother, Denzel, 6, who is free of the syndrome.

On Sunday between 9 a.m. and noon, the couple will hold their group’s eighth annual walk/run in Mississauga’s Erindale Park. Scotiabank is the main sponsor, along with Rexall and Longos.

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